The sun was shining yesterday, and today in the morning. I have been holding out for sunshine so much that I bundled up and sat freezing out on my deck yesterday doing homework in hopes it might save me. I'm not just using "save me" as a metaphor, I have been drowning in shades of grey. There has been no blue, no warmth, just cold grey. This has been a rough winter, rougher than the previous one. Possibly I felt last winter that it was okay to still be sad, or feel depressed because I was still new at this cardiomyopathy stuff. After such a good summer, fall and early winter I was doing great, enjoying school and spending time with the kids, noticing things that I was doing that I hadn't since Charlottes diagnosis. Granted there are always bumps on my emotional road, but nothing like lately. I'm not sure why I've been led off the road and down this path to where I've been, but it has felt LONG, with a lake that tangles you in the branches that line it and push you down. There have been hikers to try and "save me" but this has required grabbing branches to try and climb back up on my own, and it has been unlike any sadness, or anger I've experienced before. It has faded some with color returning occasionally with a night out here with friends, a conversation that intrigues me or the daily routine of having Jason, Brandon and the kids with me, but as soon as they left me in silence I was alone and it's return would take over and I'd allow it to swallow me.
I read an article recently about parents of premature and chronically ill children, that it is common to suffer post traumatic stress disorder any amount of time after watching a child in an ICU for any length of time. I don't know if this possibly could have been reality, or still is but hospitals have shades of grey everywhere. Some shades darker or lighter depending on the situation a family is facing. I remember feeling like blackness in that ICU somedays, and with all that I don't know, I need to write about everything that has gone down to find that last branch to possibly heal my cold skin, and open cuts/scratches. To bring that color back that has been missing for quite awhile now.
This task is so daunting, even with a child who appears SO incredibly well on the outside, just knowing all the "possibilties", the "what if's" and how it affects everyone in the family is a task I pray that I master, I have to master, if we're going to survive this.. Being me sometimes I feel that you have to go to the deepest depths to come out with a better understanding of how to survive them for next time, if there is to ever be a next time. Maybe this journey over the last few months has been part of that, I just hope the lake is getting more shallow, temperature warming, the color returning.
Last week the CCF support group lost three children in one week, without a doubt I hit bottom. The murky, lonely, dark bottom. Some think I need to pull myself away from the group to survive my own life and I agree that I am invested heavily in these families. I don't however think I could ever turn away from them now, not entirely. They mean too much to me, they are formidably the ONLY people who understand my life now. It's true that every once in awhile we lose a child (rare that it would be three), however, according to everyone whose been comforting me for so long now, anyone, can lose a child at anytime. The problem that is failed to be noticed is that for us it actually happens, it's not just a possibility, it's a REAL reality. No matter how much I pull myself out of these small whirlpools that spin me around sometimes, they also feed me with love, with knowledge, with asking nothing in return except to be a feeder to their whirlpools too. It doesn't matter the level of hurt a family is feeling, no one judges there whether I have any right to be as upset as I am because my daughter is doing okay right now. They just know that whatever stage we're at, we're all there for each other battling the uncertainties, the same branches. So I've asked to get one email a day that includes everything, instead of 50 individual ones from the group. I will open myself to the idea that maybe it's time for someone uninvolved to listen to me, to allow me to say all of the stuff that I want to write here but don't because it'd be weird, and I'm weird enough to you all as I already am :)
Most of the time, in fact 95% of the time the stories we share are of hope for new discoveries, triumphs a child who had no hope of overcame. We share doctors that are skilled in certain areas we need, and without a doubt there is ALWAYS an answer when you're in a dark hour. I admit I might have to take a step back and FOCUS on the LIFE that IS in front of me until I am so seasoned at this that I can be support for others. A friend recently said something that although it's tough to accept, is also completely true. She said that "I've only been at this under two years, it's still new and it's still fresh". In the scheme of Charlotte's lifetime, this is such a small amount of time when it seems like SO long ago sometimes. Often I start to sink deeper because I feel so weak to it still, and I hate feeling weak, which then makes me miss another branch and I fall deeper still. She said I am still "a mom in NEED, a mom of a sick child", it reminded me that maybe I'm not ready to be the ultimate cardiomyopathy conquerer, fundraiser champion, counselor to all. I SO want to be but maybe I just need to take it one branch at a time. I don't want my husband paying for it's cost anymore, I've already given enough of my life to this disease. I don't want my children paying for it's cost because they witness my frustration enough on a daily basis.
So today I will begin to grab one by one until I am fully released from this grey lake, and I will with each step TRY to walk the path back, a little closer to acceptance, forgiveness, regained faith, and each bit of my personality and will power that I have allowed lost these last few months.
I will also call someone bigger than myself to help:)
Thanks everyone for your love and support lately, even when I want to be angry at you for telling me what to do, or not do. This won't be the last time you see me cry, or be angry, Charlotte has a LONG way to go in this lifetime.
XOXO
Courtney
My Charley Girl
Tuesday, March 15, 2011
Thursday, March 3, 2011
Clinic Visit
Hi everyone,
I just wanted to let you know how Charlotte's cardiology visit went today. For the first time EVER in two years the parking garage was full at the hospital and valet was backed up like crazy. I think it's pretty ridiculous that we have to pay $2.50 just to get into the parking garage in the first place but then to have to pay the $4.00 for valet when THERE IS NO WHERE ELSE TO PARK, is just plain IRRITATING. I was pumped because I arrived 20 minutes EARLY, yes 20 and we all know that Courtney Smith arriving anywhere early is a miracle in itself. Well due to the parking hassle I ended up being 15 minutes LATE. If I had been my old self the head of Children's Hospital would've been standing outside in the valet lane giving everyone their $4.00 back. Once I finally got upstairs to cardiology the girl at the front desk said they'd been hearing that a lot lately and that we should really complain to make them do something about it. So I might put in a call or email to someone just to add to the "fix the issue" campaign but I am ultra proud of myself as I did not swear once, or sigh, or want to punch anyone. The way I've been feeling lately I accomplished a great feat in that today;)
The one thing I love about our cardiology office is that no one is ever in a hurry to do anything. I think when you are in the medicine business you learn how to be EXTREMELY patient and I could've been an hour late and no one would've cared.. They are always laid back and just go with the flow, I could learn a few things from them;)
It never ceases to amaze me how calm and collected I feel going there and yet my stomach is ALWAYS a mess. Today on the way as I was trying to calm my own, Charlotte said "my tummy hurts" and all I could think of was how she might inherit the anxious stomach which would really suck because she has LOTS of nerve racking stuff to go through yet..
I had been preparing her for days now in hopes that she would cooperate a little better for her echo than she did last time. I showed her video's of other little kids getting them, and how good they behaved only to hear her several "swiper no swipping's" and "no, no I not's". It turned out that they didn't need one this time which was good for her, bad for me. I like having them because I know she at least hasn't gotten any worse. Unfortunately my preparing her might have backfired because she was terrified of everything that she normally does really well at. Once she realized it wasn't the echo she'd calm down. Not sure how I'm going to approach it next time, but maybe I shouldn't try so hard to make her accept it.
Regardless she hasn't seemed any different and keeps chugging away so I assume and Dr. L'ecuyer confirmed that she appears unchanged. We talked about preschool a little and he doesn't feel that she needs any restrictions other than the staff and teachers allowing her to regulate her own activity level. I'm not sure how I should handle that, I've been reading about doing a 504 but he's not sure it is needed for preschool. I'll talk to the preschool program about it when I sign her up in two weeks. We discussed genetic testing and we can do that anytime, it's just up to me to say the word. I keep talking myself out of it which is ridiculous on several fronts. If I do it and they don't find any gene mutation that caused her cardiomyopathy it won't change anything we just continue on as we are now, and even if they did find something we would continue on as we are now. However, if we did find a mutation, all of us could also be tested for that mutation and it may protect other family members from experiencing what Charlotte has.
As you can see whenever I leave appointments I almost always end up with more questions than what I came with. This is the story of this life, questions, answers, questions.
He did outfit her with a 24 hour holter which has five leads attached to a little box on a string she has to wear around her neck. At first after she got over being ticked about the "stickers" as I call them, she said "oooo a necklace" when we put the box on. We've been home for a few hours now, (she likes all clothes off at home) and therefore the box allure is starting to wear off. We've had three attempts to remove the box so far but all in all she's playing and just following her normal routine. We'll see how bedtime goes:)
Dr. L'ecuyer told me today that one of his patients who remained stable like Charlotte for four years declined recently and required transplant. We again discussed how variable the disease is, and just because that is another childs story doesn't mean it will be Charlotte's. Another nuance of our new life, we just don't know what her story will be. For all who think I should be moving on, over my fears, just living my life normally, that is most what you misunderstand. A parents playbook consists of raising your children to be their best, elementary school-jr. high-high school and college. Then it's work, possibly marriage, and grandchildren along with all of the glorious, happy, dirty, messy, emotional in between. A parent of a child with a chronic life threatening illness doesn't get that playbook. Our playbook was shredded, it has no plays, it is yet to be determined. Does it mean we won't enjoy IT, whatever "IT" is? No of course not, but living this way is hard.
He was funny because he has another doctor shadowing him and was sure to explain to her that he tells me things she might not hear him tell others. Because, as he put it "Mrs. Smith wants to know EVERYTHING", which of course gave a good laugh. Driving home before I made my phone calls, I thought about his comment, which is totally hilarious and true. I do want to know EVERYTHING. I want to obsess over it, it is my survival mechanism.
I may have to write more about that thought later, because I have been feeling very pent up lately and have so many thoughts to let out. However my thoughts of late aren't all that pleasant, and anger has been at the top of my list so for now I'm sending this off so you know how it went today.
Thanks and Love,
Courtney
I just wanted to let you know how Charlotte's cardiology visit went today. For the first time EVER in two years the parking garage was full at the hospital and valet was backed up like crazy. I think it's pretty ridiculous that we have to pay $2.50 just to get into the parking garage in the first place but then to have to pay the $4.00 for valet when THERE IS NO WHERE ELSE TO PARK, is just plain IRRITATING. I was pumped because I arrived 20 minutes EARLY, yes 20 and we all know that Courtney Smith arriving anywhere early is a miracle in itself. Well due to the parking hassle I ended up being 15 minutes LATE. If I had been my old self the head of Children's Hospital would've been standing outside in the valet lane giving everyone their $4.00 back. Once I finally got upstairs to cardiology the girl at the front desk said they'd been hearing that a lot lately and that we should really complain to make them do something about it. So I might put in a call or email to someone just to add to the "fix the issue" campaign but I am ultra proud of myself as I did not swear once, or sigh, or want to punch anyone. The way I've been feeling lately I accomplished a great feat in that today;)
The one thing I love about our cardiology office is that no one is ever in a hurry to do anything. I think when you are in the medicine business you learn how to be EXTREMELY patient and I could've been an hour late and no one would've cared.. They are always laid back and just go with the flow, I could learn a few things from them;)
It never ceases to amaze me how calm and collected I feel going there and yet my stomach is ALWAYS a mess. Today on the way as I was trying to calm my own, Charlotte said "my tummy hurts" and all I could think of was how she might inherit the anxious stomach which would really suck because she has LOTS of nerve racking stuff to go through yet..
I had been preparing her for days now in hopes that she would cooperate a little better for her echo than she did last time. I showed her video's of other little kids getting them, and how good they behaved only to hear her several "swiper no swipping's" and "no, no I not's". It turned out that they didn't need one this time which was good for her, bad for me. I like having them because I know she at least hasn't gotten any worse. Unfortunately my preparing her might have backfired because she was terrified of everything that she normally does really well at. Once she realized it wasn't the echo she'd calm down. Not sure how I'm going to approach it next time, but maybe I shouldn't try so hard to make her accept it.
Regardless she hasn't seemed any different and keeps chugging away so I assume and Dr. L'ecuyer confirmed that she appears unchanged. We talked about preschool a little and he doesn't feel that she needs any restrictions other than the staff and teachers allowing her to regulate her own activity level. I'm not sure how I should handle that, I've been reading about doing a 504 but he's not sure it is needed for preschool. I'll talk to the preschool program about it when I sign her up in two weeks. We discussed genetic testing and we can do that anytime, it's just up to me to say the word. I keep talking myself out of it which is ridiculous on several fronts. If I do it and they don't find any gene mutation that caused her cardiomyopathy it won't change anything we just continue on as we are now, and even if they did find something we would continue on as we are now. However, if we did find a mutation, all of us could also be tested for that mutation and it may protect other family members from experiencing what Charlotte has.
As you can see whenever I leave appointments I almost always end up with more questions than what I came with. This is the story of this life, questions, answers, questions.
He did outfit her with a 24 hour holter which has five leads attached to a little box on a string she has to wear around her neck. At first after she got over being ticked about the "stickers" as I call them, she said "oooo a necklace" when we put the box on. We've been home for a few hours now, (she likes all clothes off at home) and therefore the box allure is starting to wear off. We've had three attempts to remove the box so far but all in all she's playing and just following her normal routine. We'll see how bedtime goes:)
Dr. L'ecuyer told me today that one of his patients who remained stable like Charlotte for four years declined recently and required transplant. We again discussed how variable the disease is, and just because that is another childs story doesn't mean it will be Charlotte's. Another nuance of our new life, we just don't know what her story will be. For all who think I should be moving on, over my fears, just living my life normally, that is most what you misunderstand. A parents playbook consists of raising your children to be their best, elementary school-jr. high-high school and college. Then it's work, possibly marriage, and grandchildren along with all of the glorious, happy, dirty, messy, emotional in between. A parent of a child with a chronic life threatening illness doesn't get that playbook. Our playbook was shredded, it has no plays, it is yet to be determined. Does it mean we won't enjoy IT, whatever "IT" is? No of course not, but living this way is hard.
He was funny because he has another doctor shadowing him and was sure to explain to her that he tells me things she might not hear him tell others. Because, as he put it "Mrs. Smith wants to know EVERYTHING", which of course gave a good laugh. Driving home before I made my phone calls, I thought about his comment, which is totally hilarious and true. I do want to know EVERYTHING. I want to obsess over it, it is my survival mechanism.
I may have to write more about that thought later, because I have been feeling very pent up lately and have so many thoughts to let out. However my thoughts of late aren't all that pleasant, and anger has been at the top of my list so for now I'm sending this off so you know how it went today.
Thanks and Love,
Courtney
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